By Shyrea Thompson, IRIS Collaborative and Falasha Zünd, Public Health Consultant
People see breast cancer as a disease affecting women equally. Pink ribbons of solidarity in a fight together against breast cancer. Yet, little do many know that black women are fighting the same cancer in name but with entirely different circumstances, and black women are disproportionately impacted by breast cancer. We live in a world where income and health outcomes converge every day, contributing to an on-going debate surrounding breast cancer outcomes. The social determinants of health – the very factors leading to these disparities are not as simple as "poor vs. rich". Black women with equal education, income, and access to care as white women are still more likely to die from breast cancer. In the U.S., black women die of breast cancer 42% more than white women due to multiple factors.
All of these circumstances bring us to the question 'Why?'
Well, the studies have answers for us. Black women are diagnosed younger, at later stages, and with more aggressive forms of breast cancer. Black women also have endured systemic bias in medical settings, delayed treatment after the initial diagnosis, barriers in screening, delay in the post-diagnosis treatment, lack of awareness about risk factors, and equitable access to high-quality health care. These are only some of the factors leading to more black women dying every year from breast cancer, more specifically, Metastatic Breast Cancer (MBC). Yet, more than 60% of women say they know little to nothing about MBC.
So first, what is MBC, and how does it impact black women?
Metastatic Breast Cancer (MBC) is breast cancer that has spread beyond the breast to other organs in the body such as the bones, lungs, liver, or brain. MBC is also known as stage 4 breast cancer. Today, this terminal cancer has no known cure, which leads some to refer to MBC as “the breast cancer that kills”—claiming nearly 40,000 lives a year for the last 20 years.
Thankfully more investments in MBC research and breakthroughs are underway. However, black patients are missing in much of this vital research, accounting for only 5% of clinical trials, yet make up 13% of the population. Conversely, white patients account for 83% of research participants and 60% of the population. While consensus is building around the fact that black women dying more from breast cancer is unacceptable – the disparities continue.
When compared to white women, black women are also twice as likely to be diagnosed with breast cancer below the age of 35. Studies have shown young black women are at greater risk of early onset of breast cancer is due to tumor characteristics. Specifically, Triple-Negative Breast Cancer (TNBC) is a type of breast cancer that is twice as common in black women than in white women. TNBC is difficult to trace, less responsive to treatment, more likely to produce larger tumors, and increases the chances of metastases. More research is needed to understand TNBC and black women fully.
With all that said, how can we set the table for real change?
Fifty years later, Shirley Chisholm’s “if they don’t give you a seat at the table, bring a folding chair” continues to catalyze change. In 2019, inspired by this truth, Tigerlily Foundation in partnership with The IRIS Collaborative set out to create a seat at the table - or build a new table to bring the voice of women of color to the forefront of scientific conferences, to transform interactions with the medical and scientific community and policymakers to put words into action.
#ListenUpMBC is our collective call to action to end MBC disparities. Through collaboration, we are advancing stakeholder recommendations, which include engaging women of color in advocacy, leveraging social media, and participating in conferences to share the importance of access to innovations in MBC treatments, including clinical trials and genetic testing for women of color towards achieving our goal. After the success of the historic #ListenUpMBC Young Women’s MBC Disparities Fireside Chat during the 2019 San Antonio Breast Cancer Symposium, we are expanding to go virtual in 2020.
This Women’s Health Month, we will host the first virtual #ListenUpMBC Confab on Young Women's Metastatic Breast Cancer Disparities on May 27, 29, and 30.
This 3-day virtual event includes a Twitter 101 Lunch & Learn, Confab, and Happy Hour which takes place during the American Society of Clinical Oncology (ASCO) 2020 Virtual Program to amplify this year’s theme "Unite & Conquer: Accelerating Progress Together”.
The first 100 registrants by May 15 will receive a #ListenUpMBC Confab swag box shipped for free with conference materials and goodies from our generous sponsors. All Confab participants will enjoy a virtual swag bag.
In the spirit of Shirley Chisholm and Rihanna, we are asking you to “pull up”. And then “listen up” as young women of color who are usually not "at the table", scientists, oncologists, and industry leaders share insights, best practices, challenges, and solutions towards ending MBC disparities in our lifetime.
We invite you to join us in true solidarity for this important conversation. Register here today https://lnkd.in/e6fMaTV.